Rick Nash has had hepatitis C his entire 29 years
of life. He didn’t know about the infection until the summer prior to
starting 7th grade. Rick wasn’t even a teenager, and he was already
showing signs of advanced liver disease from chronic hepatitis C virus
(HCV).

Rick acquired HCV when he was
an infant. Approximately 6% of infants with HCV-positive mothers will
acquire the virus perinatally: This is known as vertical transmission.
When Rick learned that he had hepatitis C, his mother was diagnosed
too. Up to 4000 children in the U.S. contract HCV vertically every
year.

According to NHANES-III, about
0.17% of 6-11 year olds (31,000) and 0.39% of 12-19 year olds (101,000)
are HCV antibody-positive. This amounts to roughly 23,000 to 46,000
children in the US with HCV. Vertical transmission is the most common
way children acquire HCV. Another frequent HCV transmission mode is via
drug use, which is infecting adolescents at alarming rates.

Before going further, it is
important to note that information about HCV in the pediatric population
is disturbingly minimal. The best source of information comes from the
practice guidelines by the North American Society for Pediatric
Gastroenterology, Hepatology and Nutrition (NASPGHAN) published in June
2012. With no mention of the newest HCV treatments, the guidelines
are outdated.

NASPGHAN admits that little is
known about the pathophysiology of HCV in infants and children.
“Infants may have certain defense mechanisms, possibly age-related,
which explain the relative inefficiency of mother-to-infant HCV
transmission.”1 Nonetheless, HCV during childhood is still
quite serious. There is a 26-fold increased risk of liver-related death
associated with chronic HCV acquired in childhood.

Generally, HCV progression in
children is not as severe or as rapid as it is in adults. However,
significant fibrosis or cirrhosis may occur, as was the case with Rick.
Pediatric liver transplantation from HCV is rare. Hepatocellular
carcinoma (liver cancer) is extremely uncommon in HCV-positive
children.

Cognitive impairment has been
observed in children with HCV. This includes developmental delay,
learning disorders, and cognitive deficits. Children are less likely
than adults to have HCV extrahepatic manifestations; cryoglobulinemia
and lymphoma have not been reported. Glomerulonephritis (a kidney
disease) may occur in children with chronic HCV.

Hepatitis C in Society Hepatitis C doesn’t just
affect the body; it affects social systems. A child with hepatitis C has
complicated social systems. The child’s parents may be worried. Kids
may not have the maturity to deal with the shifting sands of living
with a chronic, infectious disease. Keeping others safe is a tricky
issue, and these issues differ if you are five versus fifteen years
old. Conversations about sex and drugs are more complicated when you
have a potentially infectious virus. Telling an HCV-positive kid to
avoid alcohol is an even more serious discussion than it already is.

In the middle of all this is
stigma. The public isn’t kind, especially to children living with
infectious diseases. Zachary is a second grader in Virginia who is
struggling with hepatitis C.2 He contracted HCV at birth
and was adopted into a loving family. His family had no experience with
HCV, and his mother learned all she could about it. Zach is now six,
and has already undergone combination therapy with interferon and
ribavirin, but didn't respond.

Zach’s mother Kelly noticed a
few changes relating to school. Zach revealed that he would be in
trouble if he got a loose tooth at school. He was barred from using the
school computer because of concerns that he might sneeze on the
keyboard. All the students except Zachary were invited to join an after
school wrestling program. This occurred despite the fact that Kelly
has educated the teachers and officials at school about HCV
transmission.

This is a common story. We saw
it with HIV. Ryan White was kicked out of school because he had HIV.
The family was constantly harassed and threatened. The Ray brothers,
three boys with hemophilia, experienced the same horrors. They were
banned from school in Arcadia, Florida. They fought and won the right
to attend, but their house was burned to the ground because of arson.
Blogger Shawn Decker was another hemophiliac who was dismissed from
school because of his HIV status. He also had hepatitis B and C. He
lived to share his story. Ryan White and two of the three Ray brothers
are dead.

Treating Children for Hepatitis C
Rick’s first glimpse at hepatitis C treatment was
watching his mother go through it. “My mother would end up going on two
hep C treatments while I was in school. Each treatment she went
through gave me a glimpse of the insane side effects and pain she
suffered from interferon. This wasn't just my mother’s pain; it was
also mine.” Eventually, Rick’s mother would be cured. Rick was not as
lucky.

As shocking as it may sound,
the only FDA-approved HCV treatment for children is peginterferon plus
ribavirin. Children with genotype 2 or 3 need 24 weeks of treatment;
everyone else endures 48 weeks. Response rates are slightly more than
50%. Genotype 1 patients have the lowest rates (47%).

Side effects are common and can
be quite severe. Neuropsychiatric side effects can be difficult to
manage. Thinking back to my two interferon experiences, I was a wreck. I
can’t imagine what it would be like if I was a youngster and didn’t
have the coping skills that come with maturity.

Rick’s first treatment began
when he was 18 years old. As an adult, he now had access to all the
medications, however, at that time there wasn’t much. He started with
interferon, a difficult treatment that did not work. He made his way
down the menu of HCV treatments, and is now on his fifth attempt, using
Harvoni. In the meantime, Rick struggles with decompensated cirrhosis.
He has portal hypertension (high blood pressure in the liver),
esophageal varices, hepatitis encephalopathy (mental confusion caused
by high levels of toxins in the blood), ascites (accumulation of fluid
in the abdomen), and jaundice (build-up of bilirubin in the blood which
causes yellow skin and eyes, dark urine, and clay-colored stools).

If Rick were still a kid, his
choices would be to use peginterferon/ribavirin, look for a clinical
trial, or wait. Some pediatric hepatologists will prescribe HCV
treatment off-label, but getting insurance companies to cover the cost
of off label drugs is challenging. When this article was going to
press, there were at least two trials for kids, but there aren’t many
slots. (See ClinicalTrials.gov for more information.)

Coping
Coping with hepatitis C is hard, but coping with it
when your child has it, or you yourself are a child, takes monumental
strength. In his young life, Rick Nash has coped with fragile health
and five HCV treatments. “My mother didn't know the risk when she had
me, and she told me that in hindsight had she known, she would have
been less likely to have taken the risk of having me. I told her that
whatever the risk, I am glad of having been born, even if it meant I
could have only done so having been given the virus. It is through this
hardship I was able to better know myself, and better know my mother.
Pandora opened the jar not knowing its contents, but within the dread,
there was the greatest gift of all: hope.”